Men to Boys: A Discussion of Hereditary Cancer with Your Children

October 16, 2018 by Harvey Singer

In early 2008, I received a phone call from my sister informing me that after her third breast cancer diagnosis, she had decided to undergo genetic testing. Her first breast cancer was diagnosed at the tender age of 37, one month after our mom was also diagnosed with breast cancer. Two subsequent recurrences later, she needed to know if there was some sort of genetic link.

Genetic testing for BRCA was very early in its use. When Vicki called me and told me that she had tested positive and that I could also be carrying the same BRCA2 mutation, I was slightly dismissive. Being a man, I certainly didn’t have to worry about getting breast cancer! Boy was I wrong. Nine months later I was diagnosed with breast cancer!

In 2008, both of my boys as well as Vicki’s three boys, were all adults. They were college graduates and working in the real world. There is nothing more “real world” than attempting to explain to your children that you have been diagnosed with cancer and even worse, that the cancer was the cause of a genetic mutation.

Having two very educated sons who were just beginning their lives after completing the rigors of college and the beginning of their working lives, having a conversation regarding their risks was quite difficult.

First, you need to get passed the “guilt.” It’s one thing for me to deal with this dreaded disease, but the fact that I may be the cause of my kids having to deal with the same disease can be quite a heavy burden. I rationalized my guilt with the understanding that I couldn’t blame my mom for passing it along to me. She had no way of knowing back in 1954 and, likewise, I had no way of knowing back in 1983 when my first son, Matthew, was born.

Having very intelligent children certainly made the early conversation a little easier. Fortunately, while I was going through my mastectomy and subsequent chemotherapy treatments, my boys were not living at home. They didn’t have to witness the carnage of the surgery nor the side effects of the treatments.

In May of 2009, once somewhat recovered, it was time to have the hard conversations with the boys. I did not “sugarcoat” any of the details. I needed to be as up front as possible and I needed to impress upon them the importance of being vigilant and in tune with their bodies. I also began to stress the importance of a healthy lifestyle. Although they may or may not be carrying this BRCA2 mutation, maintaining a healthier way of life was imperative.

You need to recognize that every child is different and how they react or utilize the information you’re about to provide them will be unique. My eldest son initially reacted with defiance. Being a highly-skilled athlete his whole life, he did not want to be burdened with fear of getting sick. He “just wanted to live his life,” as he told me. He did not want to get tested to find out if he was a carrier.

My younger son, who was much more vulnerable, absorbed the information differently. He had to know! “When can I get tested?” was his response.

Being open and rational to each child individually is key to this process. Being prepared with data and information to help explain the details and risk of what is ahead for them is extremely imperative.

When I was diagnosed I spent much of my time to find out as much information of my specific cancer as I could. I preach this to all the men who contact me through the HIS Breast Cancer foundation website. Cancer is complicated! There’s no cookie-cutter approach that works for every patient. You better learn everything possible to help you make intelligent decisions. Your doctors provide you with options, but YOU make the decisions!

If you know the important details, it will enable you to explain to your children their options and their risks. You can’t force your kids to get tested and you certainly can’t use the “fear factor” in order to gain what you decide they need to do. Believe me, they have enough fear in just knowing they may be at risk.

I am now 10 years post my initial diagnosis and eight-and-a-half years post my second diagnosis of prostate cancer. I have learned a lot. My kids have learned almost as much. My younger son, Jameson, who is now 33, was tested and fortunately was negative for the BRCA2 mutation. Even though he was negative, he adopted a much healthier lifestyle since our early conversations and pays attention to his body.

My other son, Matthew, who is now 35, still has not been tested. He is not married and has no immediate plans for children of his own. We continue to have “casual” conversations regarding being tested. I will be more forceful very soon and certainly before he has his own kids. He needs to know if he is a carrier, and that he understands the possibility of passing it down.

He will need to begin screening for all the possible cancers that BRCA2 can cause and be vigilant as he approaches 40. He gets it… I pray!

Vicki’s oldest son was tested and was negative and he, too, has two children of his own. Vicki’s youngest children, identical twins, plan to be tested together very soon. And because they are identical twins, if one is positive, then the other is, too. So, they need to coordinate the process.

Harvey I. Singer is the co-founder of HIS Breast Cancer Awareness Foundation, Inc. Singer, 64, has been married to his wife, Donna, for 39 years, and the couple resided in Western New York. Singer tested positive for the BRCA2 genetic mutation, and was diagnosed with ER/PR-positive breast cancer in 2008, and stage 1 prostate cancer just two years later. Since, Singer has authored a book, titled “Sir You Have Breast Cancer!” and has contributed and appeared in the documentary film Pink & Blue- Colors of Hereditary Cancer.